Acute Myeloid Leukemia Cancer Grad- Maya Joná
Name: Maya Joná
Age at Enrollment: 18
Major: Acute Myeloid Leukemia
What were the primary symptoms you experienced prior to diagnosis? Constant nausea, complete loss of appetite, odd bruising (now I know it was petechiae caused by low platelets), shortness of breath/weakness.
What symptom(s) lead you to go to the doctor? Weakness and loss of appetite.
Courses completed: 4 rounds of consolidation chemotherapy.
What was your hardest moment (or moments) and how did you you get through it/them? During my first round of chemo I got very, very sick. I was diagnosed with Sweet’s Syndrome, which is a very rare skin condition, commonly linked to leukemia. It took the dermatologists quite a while to figure out what it was, and in the meantime I was getting much worse by the day. I had spots covering my legs, and within a few days I lost all strength and mobility in my legs. I could hardly move them at all. On top of that, I had gotten a pretty bad central line infection, and lost my entire voice due to already having the flu at the time I started treatment. I was jaundiced and was told my organs weren’t doing so good. I felt so weak I couldn’t even lift my phone or write a text. Finally when they diagnosed the Sweet’s Syndrome, they put me on a very high dose of Prednisone and everything immediately started getting better. I don’t remember everything from when I was that sick, I just remember doing only what was in front of me in the moment and not thinking about what was coming next. My boyfriend never left my side, he always kept me calm and positive, that was what got me through that experience.
What advice would you give to someone who is newly diagnosed? What advice would you tell them to ignore? Take everything one thing at a time, just do what’s in front of you. It’s hard but try your very, very hardest to stay positive and hopeful. Things are so much easier when you stay positive. Ignore all the people who try to push their natural remedies and oils on you. Just choose the treatment that is best for YOU, it’s no one else’s business how you choose to fight your cancer.
How did your family and friends respond? They were all shocked, but very loving and supportive. My best friend instantly booked a flight and came to help take care of me when I was first diagnosed.
Are there any bad platitudes/bad recommendations that you’ve heard from other people regarding your diagnosis? Someone messaged me, “You don’t need chemo, just envision your blood cells smiling and your cancer will be cured.” LOL!
When you feel overwhelmed or anxious, what do you do? I talk it out. I always feel so much better when I share my thoughts and fears with my mom or my boyfriend.
What do you wish more people knew/understood about the type(s) of cancer you were diagnosed with? My treatment causes me to lose my immune system temporarily, so when I don’t want hugs or ask you to please use hand sanitizer or wash your hands, I’m not trying to be rude and I don’t think you’re dirty or anything- I just can’t take risks.
Have you created any meaning out of this experience? If so, what was it/how did you do it? I’ve learned so much from this experience. I’ve come to believe that everything truly happens for a reason. This experience has made me so much stronger as a person.
How did/do you find joy during this experience? My boyfriend always kept me smiling and positive. He was levelheaded and positive the whole time and I followed his lead. My treatments lasted a month at a time each, so for the whole 4 months in the hospital, he stayed with me 24/7 and we would watch Netflix and play games together and go for walks and just talk. We became so much closer and that brought me so much joy.
Since your diagnosis, what new belief, habit or behavior has most improved your quality of life? I’ve definitely learned to just go with the flow and realize that I can’t change anything, the only thing I can change is my attitude. I’ve learned to worry less and to just deal with things as they happen, that has helped a lot.
Did you learn anything about yourself or your life? If so, what was it? I learned especially who my real friends are, and I learned that I am SO much stronger than I ever thought I was.
If you could write anything you wanted on a billboard in NYC’s Times Square that would reach millions of people, what would it read? “You can’t live in fear. Live your life to the fullest.” My boyfriend tells me this daily, it’s so helpful.